{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,20]],"date-time":"2026-10-20T04:39:02Z","timestamp":1792471142669,"version":"4.5.0"},"reference-count":38,"publisher":"Wiley","issue":"5","license":[{"start":{"date-parts":[[2026,8,8]],"date-time":"2026-08-08T00:00:00Z","timestamp":1786147200000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0\/"},{"start":{"date-parts":[[2026,8,8]],"date-time":"2026-08-08T00:00:00Z","timestamp":1786147200000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1.1"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Epilepsia Open"],"published-print":{"date-parts":[[2026,10]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Objective<\/jats:title>\n                    <jats:p>To evaluate the management practices of Infantile Epileptic Spasms Syndrome (IESS) across tertiary pediatric hospitals in the United States using a survey\u2010based approach.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>A 21\u2010question survey focused on management setting, work\u2010up, follow\u2010up and treatment was created and sent to 45 member institutions of the Pediatric Epilepsy Research Consortium (PERC). Results were analyzed by a working group of PERC focused on IESS.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Thirty\u2010three institutions completed the survey. Most institutions (91%) managed new\u2010onset IESS in\u2010patient, with 76% using overnight video EEG (vEEG) monitoring for diagnosis. Nearly all (&gt;\u200990%) obtained an MRI brain and genetic testing at initial diagnosis. The most common modalities of genetic evaluation were an epilepsy panel (47%) and trio whole exome sequencing (44%). For assessment of response at the first follow\u2010up, 45% used extended vEEG (1\u20136\u2009h), with 36% continuing to obtain overnight vEEG. The 2021 BASED score (Burden of Amplitude and Epileptiform Discharges) was the preferred method of assessing response (58%) compared to resolution of hypsarrhythmia (39%). High\u2010dose prednisolone was the first treatment for most institutions, irrespective of the etiology (apart from Tuberous Sclerosis Complex). Combined treatment (hormonal\u2009+\u2009vigabatrin) was less commonly used as first treatment (9%\u201312%, depending on etiology). Most institutions (63%) looked for failure of both hormonal therapy and vigabatrin (sequential or combined) before pursuing surgical treatment in patients with identifiable brain MRI lesions, but would also consider surgical treatment in patients with remission of electro\u2010clinical epileptic spasms but continued epileptiform EEGs.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Significance<\/jats:title>\n                    <jats:p>There are areas of consensus and variability in management of IESS in US institutions. Updated consensus guidelines addressing the comprehensive management of IESS are needed to help standardize and optimize care in these patients.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Plain Language Summary<\/jats:title>\n                    <jats:p>Infantile Epileptic Spasms Syndrome requires prompt diagnosis and initiation of appropriate treatment to improve developmental outcomes. In this survey of tertiary pediatric centers in the United States, we found areas of consensus (use of overnight video EEG at initial diagnosis, use of high\u2010dose prednisolone as initial treatment, preference for sequential as opposed to combination therapy, use of the 2021 BASED score for EEG evaluation, and the early consideration of epilepsy surgery) and variability (type of genetic testing for diagnosis, choice of second and third treatments, use of antiseizure medications for persistently epileptic EEG) in management of these patients.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1002\/epi4.70309","type":"journal-article","created":{"date-parts":[[2026,8,8]],"date-time":"2026-08-08T11:46:09Z","timestamp":1786189569000},"page":"1478-1489","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Management of Infantile Epileptic Spasms Syndrome: A survey of US pediatric hospitals"],"prefix":"10.1002","volume":"11","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-6980-8292","authenticated-orcid":false,"given":"Akshat","family":"Katyayan","sequence":"first","affiliation":[{"name":"Division of Pediatric Neurology and Developmental Neuroscience, Texas Children\u2019s Hospital Baylor College of Medicine  Houston Texas USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1026-7695","authenticated-orcid":false,"given":"Christina","family":"Briscoe","sequence":"additional","affiliation":[{"name":"Department of Neurology Boston Children\u2019s Hospital  Boston Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3544-9900","authenticated-orcid":false,"given":"Sonam","family":"Bhalla","sequence":"additional","affiliation":[{"name":"Division of Child Neurology, Department of Pediatrics Emory University\/Children\u2019s Healthcare of Atlanta  Georgia Atlanta USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sonal","family":"Bhatia","sequence":"additional","affiliation":[{"name":"Division of Pediatric Neurology University of Texas Southwestern Medical Center  Dallas Texas USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Gozde","family":"Erdemir","sequence":"additional","affiliation":[{"name":"Division of Pediatric Neurology, Department of Pediatrics, Penn State Health Children\u2019s Hospital Penn State College of Medicine  Hershey Pennsylvania USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Chellamani","family":"Harini","sequence":"additional","affiliation":[{"name":"Department of Neurology Boston Children\u2019s Hospital  Boston Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-3655-0560","authenticated-orcid":false,"given":"Senyene E.","family":"Hunter","sequence":"additional","affiliation":[{"name":"Department of Neurology University of North Carolina School of Medicine  Chapel Hill North Carolina USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7901-3960","authenticated-orcid":false,"given":"John R.","family":"Mytinger","sequence":"additional","affiliation":[{"name":"Division of Pediatric Neurology, Department of Pediatrics, Nationwide Children\u2019s Hospital The Ohio State University  Columbus Ohio USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4280-6956","authenticated-orcid":false,"given":"Duyu","family":"Nie","sequence":"additional","affiliation":[{"name":"Division of Neurology, Pediatrics and Neurosurgery Alpert Medical School of Brown University  Providence Rhode Island 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Sandoval","family":"Karamian","sequence":"additional","affiliation":[{"name":"Division of Pediatric Neurology, Department of Pediatrics University of Utah School of Medicine and Intermountain Primary Children\u2019s Health  Salt Lake City Utah USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7261-1543","authenticated-orcid":false,"given":"Avantika","family":"Singh","sequence":"additional","affiliation":[{"name":"Division of Pediatric Neurology, Department of Neurology Medical College of Wisconsin  Milwaukee Wisconsin USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Deepa","family":"Sirsi","sequence":"additional","affiliation":[{"name":"Division of Pediatric Neurology University of Texas Southwestern Medical Center  Dallas Texas USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Danielle S.","family":"Takacs","sequence":"additional","affiliation":[{"name":"Division of Pediatric Neurology and 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